Went to the ER today

[elitynski]

I don't know if this is symptomatic of IC or PFD or what but today my emotional state coupled with my feelings made me want to go to the ER where I spent 4 hours.

Of course I had to pee for them and when I was really feeling the need to pee - I could only pee 100 CCs. That did empty my bladder but it just says my bladder is irritated enough at 100 ccs to have to need to pee. They wanted to cath me for a Post Void Residual to see if any urine came out and I was like NO WAY!! They have ultra-sounds for that - I'm not getting cathed just so they could tell me that I had emptied my bladder. I won't buy that horse again.

ONE QUESTION I DO HAVE: Is the bladder irritation a part of the whole CPPS thing. I'm not suggesting IC or whatever, but I'm trying to understand. The psych did say she thought my urine did look concentrated.

The upshot of the 4 hour visit is that they tested blood / urine and all functions are good and no infection. I was soo relieved...I thought for sure they'd find something (THAT WAS SARCASM). I did find myself using the bathroom 3 or 4 times which was another fun thing.

Since I have my first psych / counseling appt tomorrow they saw no need to give me anything for my mood so it was a lovely 4 hours in a hospital gown.

Right now I'm angry and frustrated and just ticked that this is my life and that so many others are out having a good time and I'm stuck at home feeling housebound!! I was going to get supper but I didn't even feel well enough to stop somewhere.

I'm also depressed because I tend to read some of the posts on here and they sound like people aren't getting better and it depresses me beyond belief - thinking that there is no way in HECK that I am ever ever ever ever ever ever ever ever ever ever ever going to get through this - much less feel like a normal person again.

I hate that I don't have a concrete diagnosis.
I hate that I have the urethral / peeing feelings.
I hate that I have to struggle with this.
I hate that I have no one to talk to - except crisis counselors.
I hate that I have to muddle through and it's just hard.
I hate that I don't know what the future holds.

SO - forgive me for ranting and being frustrated. I dont' know how else to be. I wish I could be more positive but it's not in me right now.

[Kara29]

Chin up. It will get better as your medical team comes together. Try to keep them all on the same page so they can help you together. I hope you have a productive appointment tomorrow. You did the right thing by going to the ER with your feelings and thoughts. There are a lot of Therapists out there so if you don't click with one there are others just as with any medical doctor. It's a downer when you don't know for sure what is wrong with you. All of us are vastly different and no case is the same or has the same circumstances, so don't feel like it will be you down the road.

Anything you need help guiding you with, lets any of us know! That is what we are here for :)

You are in our thoughts and prayers and don't be afraid to tell the Doctor everything you are thinkng and feeling. Pain is Pain mental and physical.

Have you ever tried coloring? I've been working on coloring for relaxation. A Hot bath sounds wonderful! Can you take one tonight with some candles lit just for YOU? WIth a nice Cup of Chamomile Tea........I can smell it all from here in NY.

Warm Hugs,

Kara

P.S. Since you mentioned that Tea Relaxed you, I thought of a story for you. It was given to me in March along with a beautiful real tea cup, gold and all. I've had a cup of (IC Friendly) Tea every day since then..........I don't know what your spiritual background is but this goes along with every religion.

To YOU:


"There was a couple who used to go to England to shop in a beautiful
antique store. This trip was to celebrate their 25th wedding
anniversary. They both liked antiques and pottery, and especially
teacups. Spotting an exceptional cup, they asked "May we see that? We've
never seen a cup quite so beautiful."


As the lady handed it to them, suddenly the teacup spoke, "You don't
understand." It said, "I have not always been a teacup. There was a time
when I was just a lump of red clay. My master took me and rolled me
pounded and patted me over and over and I yelled out, Don't do that. I
don't like it! "Let me alone," but he only smiled, and gently said; "Not
yet!!"


"Then. WHAM! I was placed on a spinning wheel and suddenly I was spun
around and around and around. 'Stop it ! I'm getting so dizzy! I'm going
to be sick!', I screamed. But the master only nodded and said, quietly;
'Not yet.' He spun me and poked and prodded and bent me out of shape to
suit himself and then......then he put me in the oven. I never felt such
heat. I yelled and knocked and pounded at the door. " Help! Get me out
of here!" I could see him through the opening and I could read his lips
as he shook his head from side to side, 'Not yet'.


"When I thought I couldn't bear it another minute, the door opened. He
carefully took me out and put me on the shelf, and I began to cool. Oh,
that felt so good! "Ah, this is much better," I thought. But, after I
cooled he picked me up and he brushed and painted me all over. The
fumes were horrible. I thought I would gag. 'Oh, please; Stop it, Stop
it!!' I cried. He only shook his head and said. 'Not yet!'. Then
suddenly he put me back in to the oven. Only it was not like the first
one. This was twice as hot and I just knew I would suffocate. I begged.
I pleaded. I screamed. I cried. I was convinced I would never make it.
I was ready to give up. Just th en the door opened and he took me out
and again placed me on the shelf, where I cooled and waited ------- and
waited, wondering What's he going to do to me next?


An hour later he handed me a mirror and said 'Look at yourself.' And I
did.


I said, 'That's not me; that couldn't be me. It's beautiful. I'm
beautiful." Quietly he spoke: "I want you to remember, then,' he said,
'I know it hurt to be rolled and pounded and patted, but had I just left
you alone, you'd have dried up. I know it made you dizzy to spin around
on the wheel, but if I had stopped, you would have crumbled. I know it
hurt and it was hot and disagreeable in the oven, but if I hadn't put
you there, you would have cracked. I know the fumes were bad when I
brushed and painted you all over, but if I hadn't done that, you never
would have hardened. You would not have had any color in your life. If I
hadn't put you back in that second
oven, you wouldn't have survived for long be cause the hardness would
not have held. Now you are a finished product. Now you are what I had
in mind when I first began with you."

[vm]

I have been thinking about you on and off this weekend and wondering how it was going. I know you were concerned about how it would all pan out physically and emotionally.

Please, please, please, PLEASE remember as you read posts here that MOST people with IC do go on to find treatments that help them. The posts you read here are overwhelmingly from people who are still searching for answers for the discomfort they still experience. The people with IC who do find treatments that help are not usually here. They no longer need the information and support that these boards provide - they are off doing other things.

So, you will read posts from lots of people here who are still in pain and who are scared - but that doesn't mean that everyone with IC feels that way. I still remember coming here before I was diagnosed, and for some time after, and reading some uplifting posts, starting to feel good ---- and then continuing to read (I read waaaaaay too much LOL), seeing some "scary" posts, and then would end up logging off bawling my head off.

Like I said the other day - you are in one of the worst stages with this. Not knowing is just awful. Too many unanswered questions, no real direction, no treatments to specifically hone in on ----- it was my worst time. I often felt lost and overwhelmed.

My little mantra in times like that, even when I DO NOT BELIEVE IT, is "This is temporary, this is temporary, this is temporary..." Please hang in there. I know it feels so scary to even crack the door a smidge to the hope that you will feel better one day. We've all been there. You're too early in the game to give up on that hope. You've got to have hope. And we'll even help you find it on the bad days. :kissing:

[Flowerchild]

I started having problems after my surgery. Dealt with it for months on end. Then one day it subsided. I guess remission. I was 98% ok for a year or so. This past October it came back and I've been fighting with it off and on ever since. Lately I have been on an 8 week stretch. I feel exactly likeyou do some days. When I am constantly aware of my bladder, it is difficult to stay positive. And very few people understand. It messed with my emotions & attitude and I hate it. However, having been pretty much pain free before, I do have hope that freedom from the beast will come again.
Try and have that hope too. I just keep saying to myself " This mess will burn itself out " Oh, I hope it does for us both soon.

By the way, have you checked the link on here for other IC'ers in your state. There may be a support group in your area.

All the Best,
Flowerchild

[icnmgrjill]

You've got to remember that the ICN is exactly like a support group... and that means that only the people who are struggling come. Those who are feeling better stay away... same is true at any support group meeting for IC.

So, try to remember that for every patient online having a bad day, there are thousands having great days. We have 25,000 members.... so you're gonna see like 100 people a day posting that they are having a bad time of up... but there are thousands more having great days.

I've been a support group leader for 15 years... and I can honestly share with you that the vast majority of patients that I've worked with do IMPROVE!!! So carry hope in your heart.

Also... FYI... if it depresses you to read the boards... then walk away for a few days. We've all had to do it. I'm a huge, huge fan of the book "The Power of Positive Thinking" which got me through my first year with IC. I just craved good things... happy things... affirmations, good stories, jokes... anything that would lift my spirits. So, if it's just too much, either focus on the happier boards or just take some time away.

Glad to see that you're gonna talk with someone too.

Jill :)

[elitynski]

Dear ones....thanks for your notes of compassion. It is absolutely hard to go through this but you all gave me encouragement.

Kara - I've read your story and looked at your blogs and thought about all that you've been through. I am touched by your note because I think to myself - wow, she's been through soooo much - especially w/ bladder removal and PNE. Yet she keeps going. YOu set an example for people like myself who are uncomfortable and don't think they can cope with this.

VM - you touched me when you said that you had been thinking about me - I was not even realizing that somewhere others were thinking about what I was going through and your words of encouragement to think THIS IS TEMPORARY is what I need to hold on to. I am guilty of catastrophic thinking and need to learn to turn myself around. Your story was beautiful and it's a reminder that God allows us to go through times of refinement and growth.

Flowerchild - I agree - the remission was a blessing and that in itself gives you hope to go on thinking it will come again. I pray that you have your remission soon!!

Jill - thanks for your encouragement & leadership. It means a great deal to me. I am struggling so much but this board can be very soothing - and I can always count on someone to lift my spirits. It's something that the guys could benefit from.

And to all the others who read and didn't necessarily write but were thinking of me - thanks so much.

I was talking with a friend tonight who hurt his neck severely and he was telling me how he went to dinner with friends and then to the movie JOURNEY TO THE CENTER OF THE EARTH - in 3-D and how he was in pain, but allowing himself to enjoy the evening even though he was in great discomfort. I learned from him as well.

Thanks to you all - and thanks for not giving up on me and allowing me to be me!! I will let you know how my appt goes tomorrow.

Good night - eric.